November7-10 Symposium
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Posted by: Carol B ®

08/14/2002, 07:07:36

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I have been pondering the Dystonia Foundation Symposium in Miami. I would appreciate input from anyone who has attended a symposium in the past. It is a distance for me to travel but would be willing to go great lengths to gain more knowledge of SD.

Carol Buckner ADSD

Michigan







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Re: November 7-10 Symposium
Re: November7-10 Symposium -- Carol B Top of Thread Archive
Posted by: David Barton (NZ) ®

08/14/2002, 13:31:41

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Carol, although there will be a good representation of SD'rs at Miami, SD won't be the main focus, although I understand there could be an SD hospitality suite arrangement at some stage. It would be an excellent opportunity to further your knowledge of dystonia generally (SD is a focal (laryngeal) dystonia) and also meet with others.

However, if you are in an 'either/or' situation where time/opportunity is restricted, I would suggest waiting until the NSDA symposium in Washington, DC on March 8 next year. This will be exclusively about SD, and all people there will have an interest in SD - for the most part they will be SD patients.

I've noticed over the years that many people start by attending NSDA symposiums, and then if they are in a position to do so, 'graduate' to dystonia ones generally, as they come to the realisation that we have a lot in common with the other dystonias and that a cure/prevention is most likely to come from that direction.

Hope to see you at a symposium one of these days!

David Barton (AD/SD, Auckland, NZ)







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Re: November7-10 Symposium
Re: November7-10 Symposium -- Carol B Top of Thread Archive
Posted by: Lynne Martinez ®

08/16/2002, 02:40:34

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Carol,

Being a symposium advocate, here's what has worked for me over the years, in hopes this will help you make your own decision.

It seems to work best to attend a pure SD-symposium first, to get your bearings. However, if you've done alot of research and think that you might have other dystonias or movement disorders in your family (thus are interested in genetic research, etc.) and/or if can handle two days of high-quality information on *everything you ever wanted to know about Dystonia* (SD-included), then Miami might work great for you.

Timing is always an issue for me. I wrap a vacation around a symposium, if possible. Many of us were at the SD-symposium in Birmingham (Detroit), MI in 3/2001. It was excellent. It enabled me to visit my son in Philly (vacation part). Frankly, my blood is too thin for the cold climates these days so Miami in November looks good.

So, it's up to you and your interests and how thorough you want to get during your initial symposium experience. The SD-ones are more focused on our disorder, are less expensive and shorter in duration. The Dystonia ones are more expansive over the Dystonia spectrum (and they are only once every three years). The one in Victoria, BC (Canada) in 1999 was outstanding! I really enjoyed meeting the families with kids who had Generalized Dystonia.

No matter what you decide, as long as you know what you are getting into, you won't be sorry. You'll learn so much. Also, for the benefit of SD'ers, Dr. Berke of UCLA will be presenting at Miami, as he did in Scottsdale, AZ this past March.

If you miss Miami in November (the full gamut of Dystonia), there is always Washington DC next March (pure SD). That one should be top-notch. They are all unique and valuable experiences.

--Lynne (AD/SD; Northern California)







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Re: March 2003 SD Conference in Washington DC
Re: Re: November7-10 Symposium -- Lynne Martinez Top of Thread Archive
Posted by: Vicki Miller ®

08/19/2002, 19:28:20

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Lynne,

Do you happen to know the March dates for the Washington DC meeting? I like your idea about planning a vacation around it. I have a trip planned back East early next April to meet some old college friends and thought I might be able to combine the two events.

Sorry you can't come to San Diego next month, Vicki (AD/San Diego)







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Re: March 2003 SD Conference in Washington DC
Re: Re: March 2003 SD Conference in Washington DC -- Vicki Miller Top of Thread Archive
Posted by: David Barton (NZ) ®

08/19/2002, 20:06:28

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Saturday March 8, 2003






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Re: March 2003 SD Conference in Washington DC
Re: Re: March 2003 SD Conference in Washington DC -- Vicki Miller Top of Thread Archive
Posted by: Lynne Martinez ®

08/19/2002, 20:24:57

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Vicki,

Like many of us, I just make it a priority to go to one big SD/Dystonia Symposium a year (two this year, only because I planned my vacation in Arizona way before I heard about the March SD Symposium) because there is so much excellent information. The agendas may sound similar over the years but with different doctors and different patients, all these events have their own personalities and uniqueness.

So, I blow out my resources once a year and figure out what else there is to do in the area. It's always fun. They're never scheduled in areas where there is nothing to do. If you think about it, there are alot of other SD'ers doing the same thing (nice people from this BB, etc.) so it's not hard to find someone else who talks funny who wants to run around the area and see the sights also. Sharing a rental car or a museum visit or a walk around the City or a room...whatever.

If this philosophy helps others to get to such an event, glad a suggestion helped. We all usually get notice from the NSDA about 8 months in advance so that helps with planning.

Vicki, you'll have to spend a month back there! LOL. The DC event is March 8th. That's a stretch to April. It's going to be a good one though. Good luck in managing that. You just proved my point. Timing is everything on these things, especially if you have to travel long-distance. If you have *laid-back* college friends maybe they'll put you up that long? Think so?

You gave me my giggle for the day.

--Lynne

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